Community invited to fundraiser for HCFR paramedic with painful condition

Posted: Sep 23, 2013 4:31 PM EDTUpdated: Sep 24, 2013 7:59 AM EDT

By WMBF News Staff

HORRY COUNTY, SC (WMBF) – Local firefighters and paramedics are banding together to raise money for one of their own, a firefighter who is afflicted with a painful and debilitating condition.

Joe Coons has spent the last 12 years saving lives and helping others as a paramedic with Horry County Fire Rescue, according to Andy Brown with the Myrtle Beach Fire Department. Coons has been diagnosed with Parsonage Turner Syndrome and Complex Regional Pain Syndrome, debilitating conditions that have left him unable to work and with mind-numbing pain.

He spent two weeks in the hospital in July, and now he’s stuck at home while doctors say his prognosis is on the hinge, Brown says. His condition could get better, or the pain could spread.

Coons is a father of five and “is probably the best paramedic I’ve ever worked with,” Brown says.

On Tuesday night, his friends and colleagues from Horry County Fire Rescue and Myrtle Beach Fire Department are holding a fundraiser event to help the Coons family with their growing pile of medical bills.

The community is invited to a fundraiser dinner at Ron Jons Beer and Burgers Restaurant in Myrtle Beach from 5 p.m. to 8 p.m. It’s $7 for adults, and $5 for kids. There will also be to-go boxes available and a silent auction.

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A prison of pain

A prison of pain

Nikki Wesley / Metroland Media Group

Burlington teenager Megan Brown, 16, was recently diagnosed with Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she said even a feather brushing against her foot feels like lava dripping onto her skin.

“You’re laying in bed and you’re touching the sheets and the sheets feel like they’re made of barbed wire,” she explained, her voice wavering.

The 16-year-old suffers from Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she said even a feather brushing against her foot feels like lava dripping onto her skin.

According to the RSD Canada website, RSD is a debilitating disorder where the sympathetic nervous system becomes overactive and may cause numerous symptoms including burning pain, swelling, temperature change, skin colour change, diminished motor function and severe sweating. Symptoms may vary with each individual.

Brown sat on the couch in her Burlington living room, a room in which she has spent most of her time lately, she said.

Her right foot was swollen and purple and was propped up on a pillow on the floor. Her crutches, her main mode of transportation these days, were set at her side.

“There was a moment for almost two or three weeks where I was ready to give up,” Brown said. “I was telling them, just cut it off, shoot me, do whatever, just make it stop.

“I sort of withdrew and went into a depression. It was bad,” she continued. “What made it worse is that I knew I was hurting my mom because I was spending a lot time crying and telling her just kill me. I wasn’t joking, I wanted to die.”

But then she got a call from the Burlington Humane Society and her outlook changed drastically. The shelter said they had just found four week-old kittens at the side of the road and would Brown mind fostering them?

“I thought maybe this is what I need,” she said. “So I said, ‘Yes.’ We went down, we picked them up and they’ve been here ever since and, next to my parents and my sister, they’re my safety line.

“They are what I live for at the moment.”

As she bottle fed Baby Doll, the smallest of the kittens, Brown acknowledged the fact the kittens would soon grow up and would have to go back to the shelter. “But they’re my kittens. They’re my babies,” she said with a smile.

Before she was stricken with RSD, Brown hoped to pursue a career working with animals, possibly as a veterinarian or a conservation officer.

“I was looking at becoming a conservation officer and that would require weeks of being out in the wilderness, being able to run, being able to do all sorts of things,” she said.

“I’ve had to give up on a dream but I’ve got a new one and that’s what counts,” she added holding up one of the squeaking felines.

Brown started feeling the symptoms of RSD three years ago. Her first indication anything was wrong was the difference in temperature between her right and left foot.

“One was warm and the other would be freezing cold,” she said. “We just put it off as a circulation problem.”

Then she started getting pains in her legs and her foot, which doctors wrote off as growing pains or sprains.

However, in April the symptoms worsened. Brown had somehow injured her back and was resting at home when she asked her sister Amy to get her a pair of socks because her feet were cold.

“She looked and said, ‘Your foot is completely blue,’” recalled Brown. “And it looked like I’d been out in the snow for an hour.”

She said her mom, Barb Brown, rushed her to the hospital where doctors performed a battery of tests but could not determine the cause of the discolouration. She was then referred to several specialists.

“All the doctors were saying basically the same thing, ‘There’s nothing wrong,’” she said. “I know there’s something wrong, it hurts and it’s blue and it’s swollen and you’re telling me there’s nothing wrong. I had one doctor say, ‘Maybe it’s all in your mind.’”

Eventually the Browns were referred to a specialist who was able to diagnose her with RSD. Despite the diagnosis, the doctor said there was nothing they could do except pain management, Brown said.

Brown described RSD as an “invisible disease” because not many people know about it, including those in the medical profession, making it difficult to diagnose.

Recently, the family met with Sandy Smeenk, the founder and executive director of Improving the Life of Children (ILC) Foundation, which advocates for young people suffering from chronic pain illnesses and promotes peer support.

“Because best practices in medicine do not exist for complex chronic pain, they continuously fall through the cracks of care,” said Smeenk. “They are moved through the healthcare system specialist by specialist with no answers and largely they suffer in silence at home.”

Smeenk said the ILC Foundation is helping Brown better navigate the healthcare system and is working to put the teen in touch with other young people going through similar circumstances.

“That will allow them to connect and not feel isolated and alone,” she said.

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Chronic pain sufferers may have a new therapy to try out, and it’s the first of it’s kind in Idaho.

The Calmare, or Scrambler Machine, made it’s Idaho debut in June of this year. It is specifically for people who suffer neuropathy or other chronic neurological pain, which is generally a burning, stabbing, tingling pain that is constant. That kind of pain can result from certain injuries, chemotherapy, diabetes, and amputations.

Curtis Jaussi lost his leg in May from a hunting accident, and has since been haunted by phantom pains.

“I still have feelings in my foot, my shin, my ankle, I can be very specific about where I feel that pain,” he says.

He decided to try out the Scrambler Machine at the Pain Center of Idaho in Idaho Falls.

Another patient, nurse Dian Jackson, has been dealing with sensations she described as hitting her funny bone, only it is excruciating and constant. Other therapies and countless pills have not helped.

“The doctor explained to me about what it was and how it worked; I thought okay, we tried other things similar, but not quite this so I want to try anything,” Jackson said of the Scrambler. Now, just over a week later, Dian is completely off pain medication. She said her medicine costs were once astronomical.

“When we look at the treatment costs and compare it to how much they would spend on their medications, it is very comparable,” said Dr. Jake Poulter of the Pain Specialists of Idaho.

What the machine doesn’t necessarily compare to is other forms of electrotherapy. The Scrambler sends a “no pain” message from the site to the brain, while the popular Tens Unit blocks pain. The Scrambler also sends a variety of messages, so that the brain will be less likely to become resilient to the treatment.

Dr. Poulter calls it a potential “game changer,” also citing its lack of side effects.

“We haven’t seen any side effects and only benefits, which is very unique in today’s modern medicine world,” said Dr. Poulter.

As for Curtis, he looks forward to the day he is free of pain, but for now, he is thrilled with his results.

He said, “When you don’t have the pain, life just feels so much better. It’s easier to find the joy when I am not worried about the pain.”

The Mayo Clinic and University of Wisconsin are conducting ongoing studies to determine more about the Scrambler.

Nothing routine about this Mt Eliza student

THE “no pain, no gain” adage doesn’t quite cut it when describing the odds that Elise Robinson has beaten to seal a spot in the interschool state aerobic finals on May 31.

The year 12 Mt Eliza Secondary College student, who suffers from the debilitating neurological syndrome reflex sympathetic dystrophy, accomplished mission impossible when she fought extreme pain and asthma to take out second place of the senior female singles state preliminary finals in Moorabbin on May 4.

The star student with an A-grade average said she was called to the stage at 8.45pm, a time when the syndrome usually forced her into bed.

“I can’t believe that living with what I have you can do it,” Elise said. “Determination will get you there. If you use all of your resources around you, you can get there.”

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It all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a hairline fracture to her left arm. After 8 weeks, Gina’s bone had healed but the pain in her arm had grown worse. Doctors told her the pain was in her head. Gina knew better, “It was as if somebody was filling my arm with lighter fluid and lighting a match.”

After bouncing around from doctor to doctor for a year, Gina finally got a diagnosis. The fracture to her left arm had triggered the onset of a disease so rare and sinister, its nickname is the ‘Suicide Disease.’ Complex Regional Pain Syndrome (CRPS).

Complex Regional Pain Syndrome is a chronic nervous system disorder that can affect any area of the body. It often occurs with a minor injury to the arms or legs. When left undiagnosed or untreated it can spread to the vascular systems, cutting off circulation to all parts of the body, including major organs. There is no known cure.

On the McGill Pain Index CRPS is ranked 45. The burning pain somebody with CRPS experiences trumps not only childbirth, but also the acute amputation of fingers and toes. Gina experiences this degree of suffering on a daily basis. The episodes are so excruciatingly painful she will often black out.

If CRPS is caught early, it can be contained. The year Gina lost in misdiagnosis cost her dearly; living with CRPS has become increasingly difficult. The disease spread from her left arm to her left leg, then quickly to her right shoulder. It wasn’t long until CRPS began its assault on her immune system. Gina’s immune system tries to fight CRPS as if it were some sort of infection. The disease has invaded her respiratory system, causing shortness of breath and absent siezeures. Even worse, it prevents her from sleeping. Gina no longer experiences REM sleep. Without sleep, Gina’s immune system cannot recover. Her body is fighting a war against an invisible enemy and the gas tank is perpetually empty.

Three months ago CRPS accessed Gina’s nervous and circulatory systems, which causes progressive damage to her internal organs. Gina’s digestive tract is obliterated. The physical act of eating food is nearly as painful as its digestion. Her short term memory is fading. Gina will randomly lose her sight completely and without warning.

Living with CRPS is a contradiction in terms, it’s not really living at all.

For many with this disease, the only release they see is suicide. Last year, Gina joined a support group for patients with CRPS. At the time, the group was 11 people strong. That number has since whittled down to eight. The last incident, a man ended his life by throwing himself in front of a bus.

I was nervous to meet Gina. I worried that her flight from her home in New Hampshire the evening before would have exhausted her. Do I hug her? Would that hurt her? Can she walk ok? Gina arrived at theCHIVE offices with her boyfriend, Marine Corps Captain Jason Back. She walked up and gave me the biggest hug, “I’m a hugger” she said. The only thing I could think to say was to tell her: “Hi, Gina, we’re here to get you the help you need.”